Merry Christmas from Special Needs Jungle!


Have a great Christmas from Tania, Son1 & Son2.. and Leo the Labradoodle! See you in 2013.

SEN Pre-Legislative Scrutiny report- a précis and my views

The Education Select Committee report on its pre-legislative scrutiny of the SEN draft bill has just been published. The scrutiny entailed two oral sessions in which parents, professionals, service users and charities aired their views on the draft legislation.

The committee also received more than 200 written submissions, and while the report deals with key themes, it states, in bold, “We recommend that the Department for Education examine with close attention the written evidence provided to our inquiry on issues not covered in our report and give careful consideration to the points raised by witnesses in drafting the Bill which is to be presented to Parliament.”

So, lots of Christmas reading for Mr Timpson, the Minister responsible for the legislation and his draftbillofficials, along with a directive that just because it isn’t in the final report, does not mean that it can be shuffled aside.

The report concludes that, “The general thrust of the draft clauses is sound, but the legislation lacks detail, without which a thorough evaluation of the likely success of the Government’s proposals is impossible. The Government intends to provide this detail in regulations and a revised SEN Code of Practice. It is essential that these documents address the concerns raised in the detailed written submissions to our inquiry and that the revised Code of Practice remains a statutory document, subject to consultation and laid before Parliament.”

The last part of this statement is important as, so far, it has not been planned to put the revised CoP through parliamentary scrutiny, something that most people involved in the pathfinders think is vital.

However, crucially and somewhat surprisingly, the report does not recommend a significant delay in finalising legislation by 2014 but sought, “assurances that the findings from the Pathfinders will be drawn upon in detail to inform the final make-up of regulations and the Code of Practice to accompany the legislation.”

To me, these two do not go together. How can you inform the regulations from pathfinder pilots that are not due to end until September 2014 and yet still bring in legislation the same year? Unless of course you introduce the bill in autumn 2014 to be passed by the very end of the year or soon after, thus giving 9 months to put all the new structures, training and recruitment in place that will be needed to move to a new system. Not to mention writing reams of new literature explaining the changes to education, health and care providers and, of course, parents. And no, nine months is not too long, because we’re talking significant cultural and organisational change carried out country-wide. Now there’s an idea!

Edward Timpson giving evidence

Edward Timpson giving evidence

Although the extension to 25 was welcomed, the report, quite rightly, pointed to a lack of engagement with post-19 providers to make this happen. Indeed, it has been acknowledged that making these provisions work with universities who have their own structures, will be extremely difficult.

The committee recommended that the current protections that a statement provides should be preserved, which is the intention in any case. It also stated that, “The scope of entitlement to integrated Education Health and Care provision and assessments should be extended to disabled children, with or without SEN, and also to young people undertaking apprenticeships.”

While the latter part of this statement has already been mentioned by Mr Timpson, the first part, dealing with disabled children without SEN is very welcome.

Parental involvement

Parents & young people giving evidence

Parents & young people giving evidence

For me as a parent, the key paragraph is as follows: “The involvement of parents and young people in the development of Local Offers is critical, and we recommend that the role of parents and young people be reinforced in primary legislation.”

“We therefore recommend that Parent Carer Forums be listed as partners under draft clause 8 (Co-operating generally). (Point 153)

Enshrining a need for involvement from parents and young people in primary legislation means that co-production is here to stay so any professional who thinks we’ll just slink away back into the woodwork, had better come to terms with the fact that that just isn’t going to happen.

Certainly in Surrey, the fact that parents are involved from the start of the pathfinder process means we are increasingly being seen as a vital partner in consultation. For example, in Surrey we have a Disabilities Experts Group as part of a Public Value Review and I and other parents are involved. I hope this will be extended to many other areas as well.

This does, of course, bring with it responsibilities as well as opportunities, something I plan to write about in the future.

Local Offer

A national framework for the local offer is something that many people had wanted but when he spoke at the select committee, Mr Timpson seemed to think he could leave it up to parents to complain that what a neighbouring authority was doing was better than their own, thus putting them into direct conflict with the LA, something we are trying to get away from.

The committee recommended that, “the Pathfinders be used to inform what should constitute minimum standards for Local Offers, particularly to address the provision that will need to be made available in schools to support pupils with low to moderate SEN without EHCPs. We also recommend the establishment of a national framework for Local Offers to ensure consistency, together with accountability measures by which they can be evaluated. (Point 146)

Rights & Redress

This issue has been a major concern for parents and SEN lawyers. The committee felt that joint commissioning between Health and local authorities will not in itself be sufficient to secure improved engagement from Health in assessments of SEN and provision of Health services to children and young people with SEN and disabilities. Despite acknowledged difficulties with the NHS constitution, “duties can and should be imposed on the NHS which do not conflict with it. Regulations could, for instance, commit Health to adhere to timetables for assessments.”

It was also concerned at the lack of a single means of redress/appeal. “The Government seems to be relying on the duty for joint commissioning to reduce the incidence of appeals from parents and young people later on. This is too optimistic and we believe that greater protections for parents and young people in securing the provision described in an EHCP will be needed along with more coherent routes for redress for all aspects of an Education Health and Care Plan. (Point 68)

The lack of duties on Health creates a specific concern about securing services such as therapy services which may either be defined as supporting health or special educational needs. The legislation needs to make specific reference to such services to ensure that local authorities and Health cannot deny responsibility for their provision due to disagreements over which element of the EHCP they underpin. It also needs to be made clear how this provision will be funded, and by whom. (Point 72)”

Additionally,  the report recognised that improving processes for requesting, securing and carrying out assessments of SEN are top priorities for parents of children with SEN. It therefore recommended that, “current protections be reiterated in the new legislation, and that timescales for responding to a request for an assessment, and for conducting an assessment be set out in regulations. It is essential that there is an alignment of assessment timescales between local authorities and Health. Whatever the difficulties, they must be overcome. (Point 84)

There has been much complain about the apparent need for compulsory mediation before an appeal can be heard that was set out in the draft bill. The committee said that mediation should NOT be compulsory when things go wrong, but families must attend a meeting to consider mediation before an appeal is heard. I’m not a lawyer so I’d be interested to find out what they make of this change.

Other issues highlighted

While the report is too long to quote from in full, I’m listing some bullet points of causes for concern that it has picked up on and if you are interested, you can find them in the report yourself in much greater detail

  • The term ‘special educational needs” is recommended to stay the same. (point 37)
  • A clear majority of the evidence concurs with the view of the SE7 Pathfinder—the largest Pathfinder—which is “concerned that in many ways the draft clauses do not go far enough and do not fully reflect the inspirational vision in the Green Paper”. (Section 2 of the report)
  • Timescales: You cannot bring in legislation before the pilots have had sufficient time to run and be evaluated (section 2) SQW who are evaluating the process said in its own report in October that, “although pilots or policy trials may be costly in time and resources and may carry political risks, they should be balanced against greater risk of embedding preventable flaws into a new policy”.
  • Regulations should allow flexibility in the frequency and timing of EHCP reviews. (Point 100)
  • The fact that this reform is taking place at the same time as Health and social care reforms presents a risk
  • The fact that at present, there is no duty on Health or social care to make stated provisions that are contained in an EHCP for children but there will be a duty for adult social care provision in the proposed Care & Support Bill, is a concern. This is because if an EHCP goes up to 25, there will be a crossover with children’s and adult services and as a result a total mess could ensue. (point 19)
  • This is echoed by current changes in school funding arrangements and by delegated funding that has already taken place. The NUT believes any SEN bill should be delayed until September 2015 to allow the current changes to settle. Mr Timpson sent a written explanation to the committee after the second hearing which you can read at point 22.
  • The active involvement of the NHS—in commissioning, delivery and redress —is critical to the success of the legislation. Despite the acknowledged difficulties, in order for this to work, the Government must ensure that the NHS is obliged to participate fully. (Point 36).  This point is key, in my opinion, to making a success of the reforms
  • On Post 19 provision: It is vital that the responsibility, funding and, where appropriate, access to advocacy for these young people is clarified so that all those involved know what they can expect from the new provisions and who is accountable for providing it. If the purpose of the legislation is to extend education as a right to 25, then the Government needs to make that clear and fund that; if not, then that should also be made clear.
  • The report recommends that regulations make clear the necessary skills for individuals undertaking assessments and they should create a presumption that a key worker/lead professional will be appointed unless there are good reasons not to do so. (Point 60)
  • The committee was concerned by the lack of clarity as to how pupils currently receiving support under the School Action and School Action Plus categories will be supported under the new proposals. It said  the Government must make clear at this early stage what is expected of schools in delivering better outcomes for pupils with SEN who are not entitled to an EHCP. (Point 127)
  • The role of SENCos be strengthened and they must be teachers who are qualified to be SENCos
  •  Choice of school: We welcome the extension of the list of schools for which parents can express a preference in an EHCP to include academies and free schools. The case for also including independent special schools and colleges is well made. We recommend that the Government prioritise agreeing definitions so that these schools can be included in order for pupils with SEN to have access to appropriate educational provision. (Point 164)
  • Personal Budgets: The committee didn’t have much to say about these but acknowledged the opposition from the NUT. It simply stated that lessons should be taken from the pathfinders. The SE7 pathfinder has already stated that the current regulations are significantly flawed and it will be essential for future regulations to better crafted based on an understanding of the Pathfinders’ experiences.

The report’s final conclusion was that the general direction of the Government’s reforms of SEN provision was welcomed with some caveats. “Expectations have been raised and it is important that the goodwill expressed towards these proposals is not lost. There are points of detail in the draft legislation which must be addressed before the Bill is presented to Parliament and we believe it is important that lessons from the Pathfinders continue to inform the legislation as it goes through Parliament and the regulations and the Code of Practice thereafter.”

This article is, of course, a précis, coupled with my own observations as a parent of children with special needs who is involved in the pathfinder process. My views are my own and do not necessarily reflect those of Family Voice Surrey, the parent-carer forum for which I am co-chair.

If you would like to read the whole thing yourself, and I recommend that you do if you are affected by the changes, you can find them at

My pick of parents’ guest posts on Special Needs Jungle this year

SNJ-logo smallIn the last year I’ve been lucky enough to have had many parents write about their families and the issues they face raising children with special needs. These woman have a lot to share from their experiences that can help others in a similar position and so, as the year nears an end, I’d like to showcase them here in case you missed them when they first appeared during 2012.

Charlotte’s amazing brain – a heartfelt story about childhood stroke

Charlotte Neve was just seven when disaster struck. Her mother, Leila, has had to face the ultimate horror for any parent and even now, Charlotte has a significant brain injury as a result of her stroke that they are facing with the same determination as they did in their early, dark days when even survival wasn’t assured.

Read More

Advice for SENCos – the parents’ perspective from Hayley Goleniowski

Hayley was recently invited to address a group of SENCos as the neared the end of their three year Masters’ degree course. Their tutor hoped Hayley’s experience could provide the missing ingredient to the course – that of the parents’ perspective.

Read More

When the words move by themselves – it could be Visual Stress

I met a lady on Twitter a while back, Michelle Doyle, who was talking about ‘Visual Stress’. I wasn’t really clear about what this was so Michelle has kindly written about it for Special Needs Jungle about how it affects her son and her fight to get him the support he needs.

Read her story:

Pathological Demand Avoidance – one family’s story

Pathological Demand Syndrome is increasingly being recognised as being on the autistic spectrum. People with PDA will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control. One mum, Deborah Rourke, has written for Special Needs Jungle about her son, who has been diagnosed with PDA and their fight for support. It’s a heart-breaking story. Please share it as widely as you can to raise awareness of PDA.

Read more

Helping your special needs child – a mother’s story

A mum called Tanya contacted me the  other day and asked to share her story about her journey to support her disabled son with everyone, which I am only too delighted to do. Tanya has some extremely useful suggestions so I urge you to read it. Please leave your comments in the comments section so she can see them.

Read more

Empowering parents is the goal for Pat

Pat Bolton is a parent of a young person with special needs who works with a small  team of Participation Practitioners at Parents In Power, Gateshead,  Pat helps parents to get the support their children need.

Read More

Resilient Parenting – A Guest post by Lesley McCall, NLP & Hypnotherapy Practitioner

Lesley McCall is an NLP practitioner and Hypnotherapist and has a child with SEN. She is experienced in helping people with parenting issues and with children who have special needs. She has some advice on how you can stay strong as you raise your children.

Read more

Vitamin D deficiency – ASD Son2 suffers, your child might too.

BBC News today is running a story about Vitamin D deficiency in children. A lack of Vitamin D is linked to a higher incidence of diabetes, tuberculosis, multiple sclerosis as well as rickets – a disease that causes bones to become soft and deformed. The number of cases of rickets has been rising, from 183 in 1996 to 762 in 2011.

Son2 was diagnosed with Vitamin D deficiency at the beginning of this year and I wrote about the issue on my NotAsAdvertised blog.

mom-said-go-play-outside-memeHe had been having leg pains and a blood test revealed his Vitamin D levels were extremely low. The problem for Son2 is that he is not fond of the great outdoors.

For starters, there’s nowhere to plug in his computer and for seconds, he isn’t that keen on other people  – and other people have a nasty habit of being in outdoor places.

And with the British weather, the increased fear of letting our children out by themselves, and the need to slather our kids with sunscreen at the first hint of the vast yellow ball in the sky, it makes getting it from natural sources a bit tricky. If your child has special needs or disabilities, like Son2, this problem can only be intensified as they are far more likely to spend more time indoors.

Son2 was prescribed a vitamin D supplement, which he still takes. However, the last time I went for a repeat prescription, I was told that the GP was no longer prescribing it because so many people needed it and that we had to buy it from a health food store. So, even though children are entitled to free prescriptions, we now have to buy it for him to treat a diagnosed medical problem. For us, this isn’t an issue financially, but for others, who may be low income but do not fit into the government’s limited free vitamin groups, it’s not going to be high on their list of priorities.

The Royal College of Paediatrics and Child Health (RCPCH) says up to 25% of UK children are vitamin D deficient, leading to a rise in rickets cases and it’s calling for a public awareness campaign – which I think is a very good idea. Only 10% of Vitamin D can be obtained naturally through food intake and one solution has been proposed to fortify food with vitamin D as we do with other vitamins – in the US most milk is fortified in this way.

But in these days of difficult economic circumstances for families it seems a bit counter-productive to refuse supplements on prescription to those with a deficiency. Of course, we’re going to buy it  because it isn’t going to mean we have to go without something else, but many families are not in this position.

So if you want to buy it, make sure you get a good make. I get ours from Biovea because there are pure without the additives than the ones I have seen on some other sites. I also take a stronger one myself as I don’t get out much either. This is the link for Biovea online – this link is the strength recommended by our GP for our 13 year old although I stress that this is specific to him. I would recommend that you ask your pharmacist or GP for advice of strength of dosage if you want to buy some for your child.


What now for Asperger’s?

There’s been a lot of talk about the re-classification of Asperger’s Syndrome in the new US DSM-V Manual of Mental Disorders – in other words it’s bee ‘abolished’ in its own right and brought under the category of Autism Spectrum Disorder.

What does this really mean? Specifically, what does this mean for people in the UK? Below is an article from NHS Choices that sets it all out sensibly.


dsmvboyAsperger’s syndrome dropped from psychiatrists’ handbook’, is the headline in The Guardian. The news is based on a press release from the American Psychiatric Association (APA) announcing the approval by their Board of Trustees of a revised fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). The DSM was first published in 1952 and is often referred to as the ‘psychiatrists’ bible’ in the US.

The DSM is essentially designed to be a ‘user manual to diagnose mental illness’ – providing US psychiatrists with clear definitions of what pattern of symptoms correspond to specific conditions. This fifth revision, which has been a controversial issue of ongoing debate among psychiatrists and medical ethicists, is due out in May 2013.

One (amongst many) of the controversial decisions taken by the panel, made up of over 1,500 mental health experts, involved in drawing up the new draft guidelines, is to remove Asperger’s syndrome as a separate diagnosis and replace it within the term ‘autism spectrum disorder’.

In the terminology of the DSM-5 – Asperger’s syndrome would be seen as being at the ‘upper end’ of the autistic spectrum disorder (ASD). That means people with this type of ASD would normally have unaffected intelligence and language development, but would have milder symptoms affecting social interaction, behaviour and language comprehension.

message about DSM-5 written by the president of the APA (PDF, 105Kb), Dr Dilip Jeste, touches on the complexities and challenges of revising an established diagnostic system, as reported in the media. These include conflicting views among experts and the under-diagnosis and over-diagnosis of patients.

Dr Jeste also says that narrowing diagnostic criteria is often blamed for excluding some patients from insurance coverage in the US, yet efforts to diagnose more patients are sometimes criticised for expanding the market for the pharmaceutical industry.

The chair of the taskforce responsible for overseeing the DSM-5 revisions, Dr David Kupfer, said: ‘Our work has been aimed at more accurately defining mental disorders that have a real impact on people’s lives, not expanding the scope of psychiatry’.

How much of an impact will the DSM-5 have on care in the UK?

Despite the media hype, the revised classifications in DSM-5 will have limited impact on individuals who receive mental health care in the UK, at least in the short-term.

Psychiatrists in the UK tend to use the World Health Organisation’s International Classification of Diseases (ICD) system to diagnose mental health conditions, rather than DSM, which is used in the US.

Also, the term ‘autistic spectrum disorder’ (and the concepts underpinning it) have been widely used in the UK for many years. However, in the long-term, it is difficult to predict the potential impact the DSM-5 will have on the future diagnosis and treatment of mental health conditions.

Earlier versions of the DSM have had considerable influence, both in the US and across the world, in shaping opinions and driving research agendas. For example, it was the publication of the previous version (DSM-4) in 1994 that helped ‘popularise’attention deficit hyperactivity disorder.

What is the DSM-5?

The DSM-5 (the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders) is produced by the American Psychiatric Association (APA) and is the diagnostic manual used by US clinicians and researchers to diagnose and classify mental disorders. The Diagnostic and Statistical Manual (DSM), first published in 1952, has undergone several revisions to take into account progress in medical and scientific knowledge and an advanced understanding of mental illnesses.

The DSM-5 is set for publication in May 2013 and will be a revision of the DSM-4 that was produced nearly 20 years ago.

According to a message from APA President, Dr Jeste, the DSM-5 reflects the best scientific understanding of psychiatric disorders and will optimally serve clinical and public health needs. Dr Jeste says ‘the hope is that the DSM-5 will lead to more accurate diagnoses, better access to mental health services, and improved patient outcomes.’

The DSM is broadly based on the classification system published by the World Health Organization (WHO), called the International Classification of Diseases (ICD).

The ICD system is used by the UK and other members of the WHO. It allows doctors to look at clusters of symptoms to form diagnoses for all health-related conditions, including mental health conditions.

The current version is ICD-10, and it is ICD-10, rather than DSM, that psychiatrists in the UK predominantly use to diagnose mental health conditions.

Is Asperger’s syndrome no longer being considered a mental illness?

Autism and Asperger’s syndrome are both part of a range of related developmental disorders, which are characterised by:

  • a person having problems with social interactions with others
  • difficulty communicating with others
  • the person tends to have a restricted, repetitive collection of interests and activities or rigid routines or rituals

The main difference between autism and Asperger’s is that people with ‘classic autism’ tend to have some degree of intellectual impairment. According to the press release, several categories from DSM-4 (including Asperger’s syndrome) will be replaced by a single diagnostic category of autism spectrum disorders in DSM-5. The following disorders will be incorporated under the diagnosis of autism spectrum disorders:

  • autistic disorder
  • Asperger’s syndrome
  • childhood disintegrative disorder
  • pervasive developmental disorder (not otherwise specified)

The press release says that this is to help more accurately and consistently diagnose people with autism. This does not mean that Asperger’s syndrome is being removed from the DSM classification system, only that it is being placed under a single diagnostic category.

Under ICD-10, both autism and Asperger’s syndrome are classed under what are known as ‘pervasive developmental disorders’ – pervasive meaning that the characteristic features of these conditions (for example, social interaction and communication problems) are a feature of the person’s functioning in all life situations.

What new mental illnesses does the DSM-5 list?

According to the press release, the DSM-5 will include approximately the same number of disorders that were included in the DSM-4.

Additional mental disorders set to be included in the DSM-5 are:

  • disruptive mood dysregulation disorder – which is intended to address concerns about potential over diagnoses and overtreatment of bipolar disorder in children
  • excoriation (skin picking) disorder – which will be included in the obsessive-compulsive and related disorders section
  • hoarding disorder – which is said to be supported by extensive scientific research on this disorder and included to help characterise people with persistent difficulty discarding or parting with possessions regardless of their actual value

What other changes are included?

The revised manual (DSM-5) will include a section on conditions that require further research before their consideration as formal disorders. This section will include:

  • attenuated psychosis syndrome – where people have psychotic-like symptoms (such as hearing voices), but not full-blown psychosis (unable to tell the difference between reality and their imagination)
  • internet use gaming disorder – essentially, an online gaming addiction
  • non-suicidal self-injury – self-harming behaviour, but not with the intent of ending life
  • suicidal behavioural disorder – a type of personality disorder that increases the risk of a person taking their own life

Disorders that will not be included in the revised manual (DSM-5) include:

  • anxious depression – a term proposed to describe mild to moderate symptoms of anxiety and depression
  • hypersexual disorder – so called ‘sex addiction’. For more information see our October 2012 analysis “Media claims ‘sex addiction is real“.
  • parental alienation syndrome – a term proposed to describe a child who ‘on an ongoing basis, belittles and insults one parent without justification’
  • sensory processing disorder – a term proposed to describe people who have difficulties processing sensory information (for example, visual information or sounds)

Other changes to the DSM-5 reported in the press release include:

  • a broadening of the criteria for specific learning disorders
  • a new chapter on post-traumatic stress disorder that will include information for children and adolescents
  • removal of certain bereavement exclusion criteria – making clearer the difference between natural feelings of grief and mental illness.

Does any of this affect me?

Until the publication of the DSM-5 in May 2013, there will be no changes to diagnoses of mental disorders. Importantly, the DSM-5 is a US publication, so its main impact will be in the US where clinicians use the DSM-5 to diagnose mental disorders.

Clinicians in the UK predominantly use the ICD-10 system to diagnose mental disorders, while the DSM classification system is mostly used for research purposes.

As mentioned, in the long-term, the new version of the DSM may have long-term healthcare, as well as cultural and political, implications that are impossible to predict.

Analysis by Bazian. Edited by NHS Choices. Follow Behind the Headlines on twitter.

Links to the headlines

Asperger’s syndrome dropped from psychiatrists’ handbook the DSM. The Guardian, December 2 2012

Fears for Asperger’s families over quality of care as disorder is dropped from ‘psychiatrists’ bible’. Daily Mail, December 2 2012

Further reading

American Psychiatric Association. American Psychiatric Association Board of Trustees Approves DSM-5 (PDF, 155Kb) (Press Release). Published online December 1 2012

Son1 is 15 today-and proof that the right support can work miracles

Today is the International Day for Persons With Disabilities, which will be marked worldwide. It’s also Son1’s 15th birthday and I would like, today, to offer a message of hope for parents of children with behavioural problems and Asperger’s who are worrying what the future may hold for their children.

Son1 - All rights reserved

Aged 7

When Son1 started school, we already knew that it was not going to be an easy ride. Fiercely intelligent and sporty with a bright blonde mop of hair, we still hoped for the best. At pre-school, the undertrained staff had already shaken their heads at his unwillingness to go along with everyone else. If he couldn’t have the colour cup he wanted, he would rather not have the drink. He would tear around, regardless of who was around him.

Within the first few terms of reception, he had a behavioural chart. He couldn’t bear to be anything but first in the queue and if something went wrong, he would sit under the table and refuse to move. He found it impossible to see others’ point of view; on outings he was a danger to himself. Making and keeping friends was another issue. Needless to say, this all had an impact on his learning.

He loved football but would often sulk on the sidelines if he couldn’t play where he wanted. At home he would have rages, was often uncontrollable and nothing we did seemed to make any difference.

Needless to say, we were drained, stressed and desperate to help him. I even helped in school twice a week to make sure I knew what was going on there. My husband became a team football coach – something he still does – to support him.

So, lacking any useful help or advice from school, I got wise, did my research, got a referral to a paediatrician and discovered what the problem was – Asperger’s with Hyperactivity. I worked really hard to get him the statement he needed to support his social and emotional needs. We tried and discounted medication; we tried a different diet. This was against a backdrop of having a younger son with medical, social and educational needs for whom we also had to find a solution.

And find it we did.

For the last five years, as you may know, both our boys have been at the most fantastic independent specialist school that is designed for bright boys who find it difficult to learn in a mainstream setting. They may have dyslexia, dyspraxia, increasingly Asperger’s or another learning difficulty. Schools like this are few and far between and, as far as I know, there is no comparable girls’ school. We even moved house to be closer for the daily school run.

Son1, now he has been getting the right education in the right environment, is growing into an independent, clever, thoughtful young man. He has a love of, and a talent for music. He has a sense of humour. He still has his impulsiveness and stubbornness but he listens to reason – as long as you don’t ram it down his throat. Best of all, he has friends.

Some of this is down to growing up in a stable home with a family who work hard to make sure that he has what he needs – which is not always the same as what he wants. But mostly it’s the intensive input and care from the experts in the Learning and Development Centre at school

Son2 winning Chairman's Player of the Year for 2012

Son2 winning Chairman’s Player of the Year for 2012

I’m telling you this because I know very well that there are parents reading with younger children who are still at the ‘before’ stage. Who may be wondering where to turn, who can help them or if their child will ever have the kind of life they had envisaged for them. They will have faced disapproving looks from parents at the school gates and from teachers who are not trained in either recognising or supporting this type of child.

On this Day of Disabilities, I also think of those children with such severe difficulties that they may never reach adulthood, or who will be dependent on their parents or on medical care for as long as they are alive. And I realise that we are lucky. Our younger son does have medical difficulties that we have been struggling to get to grips with and this is hard, with an uncertain future, but we have experience enough now to know that we will cope.

This is not to say that some have it worse so you can’t feel bad – no one can tell you how to feel and when we see our children suffering it is devastating, whatever their condition.

But for boys like Son1, there is a solution. It takes lots of work, determination, strength and persistence – for them, you and their school. As further proof, this year at his football club, he won the Chairman’s Player of the Year Award. He played in goal for two seasons to benefit the club, even though he prefers being a striker.

My message to you is do not give up. Keep looking until you find the right solution. Get educated, get help – for your child and for yourself – but above all, believe that the future will be better.